Abstracts

Rationale: A substantial proportion of young adults with childhood-onset epilepsy may require ongoing long-term epilepsy care through adulthood. The extent to which routine epilepsy transition care planning takes place as adolescents transition into young adulthood is poorly understood.Methods: In a prospective, community-based study of newly diagnosed childhood-onset epilepsy, we assessed epilepsy care transitions in 327 young adults (> 18 yrs old) at the time of their final exit interview 18.3 (SD=1.3) years after initial enrollment. Subjects were asked the following “transition changes” discussion question: “Before you turned 18 years old, did your doctors or other epilepsy providers talk with you about how your epilepsy care needs might change as you get older?” We examined whether or not sociodemographic and clinical characteristics were associated with reported care transition discussions using t-test, chi-square or Fisher’s exact test.Results: Young adults (n=261 self- and n=66 proxy-report; proxy includes 53% under guardianship and 62% with complicated epilepsy) were 24.6 (SD=4.0) years at the final interview; mean age of epilepsy onset was 5.6 years (SD=3.8) with 51% male, 8% Hispanic, 89% Caucasian, 32% were followed by a neurologist, 77% were seizure-free ≥ 5-yrs and 28% were taking anti-seizure medication (ASM) for epilepsy. Less than 15% (n=47) of subjects reported discussion of “transition changes” with their providers, the majority of whom (n=40) reported discussing a transition plan. One-third of patients still on ASMs (33/91; 34%) and not seizure-free ≥ 5 yrs (24/74; 32%) reported having a “transition change” discussion. There was no association of having a “transition change” discussion with ethnicity (Hispanic, non-Hispanic), race (Caucasian, African American, Other) or health insurance type (private, public, self-paid, none). “Transition change” discussions occurred more often in young people who were still on their parents’ health insurance (if < 26 yrs) (p=0.02), had a neurologist (p<0.001), had more severe epilepsy syndromes (p<0.006), were taking ASM (p<0.0001), had a worse longitudinal seizure course (p<0.0001), were not seizure-free ≥ 5-yrs (p<0.0001), and had a comorbid neurodevelopmental disorder (p<0.0001). Sensitivity analysis excluding proxy-reported interviews demonstrated a similar pattern although “transition change” discussions were not associated with having parents’ health insurance.Conclusions: Less than 15% of young adults with childhood-onset epilepsy followed longitudinally since diagnosis, including one-third of those either still on ASMs or not seizure-free ≥ 5-yrs, reported having epilepsy care transition discussions with health care providers prior to turning 18 years old. While discussions were appropriately more likely for young adults followed by a neurologist, with more severe epilepsy syndromes, with persistent seizures, on ASMs or with comorbid neurodevelopmental disorders, overall they were infrequent. Efforts to understand the core components of optimal epilepsy transition care are needed in order to bridge the pediatric to adult epilepsy care gap.